Copd Foundation Inc

Bronchiectasis & ntm lung diseasethe copd foundation partnered with several global organizations to continue the annual world bronchiectasis day awareness campaign. The campaign reached millions of people and produced several pieces of digital content for international distribution such as educational events, engagement campaigns, and interactive web pages. The copd foundation continued to expand its bronchiectasis research registry (brr). The brr is a consolidated database of non-cystic fibrosis (non-cf) bronchiectasis and/or ntm patients from multiple clinical institutions across the united states. The goal of the brr is to support collaborative research and assist in the planning of multi-center clinical trials for the treatment of non-cf bronchiectasis and/or ntm lung disease. The registry reached nearly 7,000 enrollees and 24 sites contributing to enrollment and long-term data collection. Several brr abstracts were presented at international conferences, and multiple brr manuscripts were published as a result of the registry data collection.the bronchiectasis and ntm care center network launched in the spring and received numerous applications from institutions across the country. The ccn is being established to help facilitate access to specialized care. This nation-wide network of centers will strive to provide prompt and accurate diagnosis and outstanding medical care, resources, and education to those impacted by these chronic lung diseases.

Public & professional educationthe copd foundation ensures that evidence-based, current education continues to be available to all stakeholders, including patients, caregivers, and health care providers around the world. The copd foundation added three presentation decks to our health care provider 101 library covering a variety of topics such as, ntm lung disease, new paradigms in copd care, and cultural humility in care delivery. The foundation also released two new e-courses, a spanish version of the genetic copd 101 e-course and an e-course about shingles.the copd foundation ensured that patients stay up to date on best practices for managing copd by releasing a combination copd 101 and 201 booklets, delving deeper into topics such as comorbidities, nutrition, and medications. These booklets were made available in english, spanish, and french, both in print and online. The foundation provided free monthly support group and informational sessions to supplemental oxygen users to learn about their oxygen devices, ask questions, and cover topics such as care for and traveling with the devices.the copd foundation harmonicas for health program encourages participants to perform fun and engaging lung exercises in the form of harmonica playing. Materials for the program have been shared with over 20 wellness centers. Copd foundation continued to expand the reach of the harmonicas for health program to the public venues of minor league baseball games, reaching audiences of thousands and encouraging attendees to get checked for copd, as well as instituting monthly virtual harmonica play-alongs.

Communitythe copd360 community engagement committee (copd360cenco), a diverse patients and caregivers committee, continued to meet monthly to provide the voice of patients and caregivers to all the copd foundation's efforts, and to support its interactions with other health care and advocacy organizations. Patient and caregiver involvement in governance and education is the model on which the copd foundation was established. With that central goal, the copd foundation has built trust within its membership and related stakeholder groups.membership in the copd foundation captains program grew by 47%. Captains spread copd awareness in their state and local areas, mentor fellow copd community members, and participate in grassroots advocacy and community building activities focused on health policy issues that are important to those who have copd and other chronic lung diseases. The copd foundation continues to support patient wellbeing by providing free monthly support groups for patients and caregivers. Support groups are available for both patients with copd and patients with bronchiectasis and (nontuberculous mycobacterial) ntm lung disease. Hundreds of patients attend these meetings each month to discuss their experiences and learn about topics such as staying healthy during the holidays and talking to their health care providers about their specific issues and symptoms.

Advocacy & public policythe copd foundation community works with local, state, and federal policy makers to increase research funding, improve care delivery, protect access to treatments, and create policy that improves the lives of those with copd, bronchiectasis and nontuberculous mycobacterial (ntm) lung disease. The copd foundation centered its fy24 policy efforts on the following priorities:1. Increased investment in research and development of treatments for copd and chronic lung disease2. Improvement in the regulatory process for acceptance of scientifically validated drug development tools to support the advancement of new treatments for chronic lung conditions3. Access to safe, effective, and affordable oxygen therapy4. Access to effective, affordable, and equitable pulmonary rehabilitation (in-person and via telehealth)5. Stronger regulation of nicotine and tobacco productsprogress has been made on all policy priorities as a direct result of copd foundation advocacy efforts. This includes the progression of pulmonary rehabilitation and supplemental oxygen legislation through congress and the submission of over 70 budget requests to legislative offices for the fy25 appropriations cycle. Over 50 advocates joined the copd foundation in washington, d.c. To advocate for critical lung health policies during the impact lung health 2024 legislative advocacy campaign, representing 54 senate districts, 38 house districts, and 26 states.

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